My daughter is 11 also and has been diagnosed with autistic like behaviors along with Down Sydrome. We are in the process of finding a doctor to complete the evaluation. We just started this process last summer and it has explained so much!
Thanks. Have you gotten to the point yet that she has crossed over from a little girl to a woman I haven't and I dread it. We are going to the doctor this week to find out what our best course of action is. What are some of the symptoms your daughter display. In the beginning, Alisha was not sleeping, she was acting as if she didn't hear, she pulled her hair out and I mean really pulled it out. She cried and screamed without any warning and no know cause of it. She still does that now but at least she sleeps. It was 4 or 5 in the morning when she finally fell asleep and we had to get her up at 6 to go to school. I know there are a lot of different symptons in every child but I love her anyway. Well take care and keep the faith. God is working things out for us, even when we don't understand.
Yes we have crossed over this past summer. Ashley is not able to take care of this herself. She really truly is not pottytrained. I was upset. Since she can't communicate real well I was worried about the ups and downs we would have with the hormones. We have discussed different options with the doctor but haven't done anything yet as she is not very regular.
Our big thing was Ashley was fairly social when she was little and then all of a sudden she became afraid of loud noises. lots of people and new situations. She would just shut down and plop down whereever she was. She also does a groaning/moaning noise and grinds her teeth during the day. She does not make the progress at school that you would expect with just Down Syndrome. She does talk but a lot of it is not to be understood. We were just at our wits end because she has gotten big enough I can't lift her when she plops. I love her dearly and I will accept whatever God decides for her and us. But I will continue to try to find ways to help her.
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Yes, Alisha does that too, plop down and try to make sure all her weight is pressing down so we can't pick her up. She is not talking at all and has not to this day but I believe that if it is God's will she will talk someday and she will have a lot to say. Everybody just want to give you the doom and gloom of it but God gave them a life for a reason and not for others to look down on them. One day they will truly teach people something. She also falls out crying and throw her body around while she is doing it. It really take a toll out of me seeing her do it but I have to pretend I don't see her and walk away and then she will stop. She also hit things up against her teeth and she have little pits in her teeth from it. She like to pretend she is giving me a kiss and then dig her teeth in my forehead. I don't know why she does it and she only does it to me but it really hurt. She is not all the way potty trained either. She will go and urinate in the toliet but she won't do the other thing until I put a pull up on her. She is getting a little too big for the pull ups but the depends are too big. I went on Oprah's website and they have a person talking about what it's like to have autism and an adult female was writing what it was like and I understand now some of the challenges. About the lights and noise. Their hearing is much more defined than ours and flourescent lights are a problem for most of them because of the flickering that we don't even pay attention to. Well you hang in there cause God's got an awesome blessing for us.
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It has been a long time coming but we finally truly are sure what has been wrong with Hailey. She was diagnosed three years ago with hypothyroid and blood work was done including the thyroid antibody test. The antibody test was extremely high and was not brought up at that time. As my previous posts the psychosis started about six months after she started on synthroid.
Long story short two months ago I finally found a hormone doctor that was willing to see her at 14. Well, he did blood work with all female hormones, which we do see him today, but a month ago he said he had no idea how she had a period and that estrogen and progesterone were extremely low. I had noticed this last year breast development had stopped. She is lopsided and looks like they do when they first start growing. The major issue here is that the thyroid antibody test was done and the lab range is 0-60 and Hailey's is 4973.6!! This indicated Hashimoto's but looking into it further there is a Hashimoto's encephalopathy that is rare and causes psychosis, and or neurological problems. Please look this up. There are several cases of Down Syndome and this disease. People like us have it and are diagnosed with dementia and Alzheimers and even autism. It can be life threatening which scared me to death due to the fact that her doctor she had three years ago let the high numbers slide past and this was when she was still high functioning. It is treated with predisone. Hailey will be going to Duke University to see a doctor there that treats this and has done research on Down Syndrome with Hashimoto's Encephalopathy. Most doctors do no know anything about this, her primary is willing to learn as we move forward with this. Please read up and pass on this knowledge to you support groups.
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We have a son who is now 8 that has Downs syndrome, Autism and ADHD We first found out about the autism when he was two, then later then ADHD was also confirmed. Would love to get to know others that have vhildren with same diagnosis
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I'm a mother of an 11 year old with down syndrome and autism. Would love to correspond with others with children with the same. God bless you all.
Hi our daughter 6 wass just dual diagnosed what have you found that works our daughter was a little verbal and regressed now things are starting to come back due to supplements it's very scary but we are moving in the right direction I hope you're having success talk to you soon
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My 18 year old son has Downs and Autism and is also Bipolar. Diagnosis was difficult over 10 years ago because I was told the two could not coexist. I noticed he was not your typical downs when he started to decline in cognative functions around age two. He stopped talking (he used to be able to say momma, dadda, juice, etc) and started self injurious behavior along with rocking and flapping arms, repeated vocalizations, etc. At age 8 we moved and he attended a Special Education School where the wonderful teachers there potty trained him (he still needs help wiping after #2) and he is still attending there at age 18.
He was rediagnosed at age 10 with downs and comorbid autism and bipolar mania (as mood patterns observed, were consistant with bipolar mania).
He has unpredicted occasional aggressive/violent outbursts not always observed with demands or transitions- frequently just out of the blue- but he seems remorseful afterwards. We have tried just about all meds avaliable that does not require blood draw monitoring as he is a difficult draw due to rolling veins.
We have also tried Abilify which for the first 2-3 years helped to minimize aggression and helped him to focus better on learning, but he developed a swallowing disorder and vomits frequently, and also a condition called Occular Crisis, where he cannot control his eye movement sometimes for hours. Life has been very challenging, but I love my little guy and he does give the best kisses and has the most beautiful smile.
I'm sure other parents have similar challenges and I am open to suggestions and/or questions.
Hang in there- we shall overcome anything that comes our way!
Last edited by Administrator; 12-30-2012 at 11:44 PM.
I'd really like to learn more from you. My son has D.S. 18 yrs old, we are going around and around with the medication. he started out with risperdol (sic) which sedated him and induced a food obsession then intuniv for self-injurious gestures, abilify for impulsiveness, generic prozac for depression/anxiety. Then he started gagging/vomiting. Pediatrician said it was "emotional" he has been to a good counselor the last two years, also a psychiatrist. He just had a modified barium swallow and he has GERD. He's now taking an over the counter "purple pill" for that plus maalox tabs and lots of water. Now he is having strange eye movements and headaches. It seems you know what these side effects are called.
And he has become violent, won't shower, won't eat at the dinner table, he is just falling apart.
Aw I'm so sorry for all your son is going through these drs DO NOT understand how our kids bodies work AT ALL and it's sick because just as your child has been put on numerous meds the probability of him actually needing them are slim to none but anyway I can go on forever how drs misguide us but to try to help you has your son been checked for Celiac , candida overgrowth, it sounds like he has alot of metabolic issues going on if you have any DAN drs in your area I would suggest you take hime there or a holistic type of dr someone who will check all his metabolic levels and look for underlying causeses for his actions I always cross referance down syndrome or autism with whatever issues are going on with our peanut here are a few things I can let you know
NEVER GIVE TYLENOL OR ACIDAMINAPHIN -it depletes glutithione levels in our kids and causes ALOT of problem
OXIDATIVE STRESS- is big problem our kids can't detox all the toxins as a typical person would
MITOCHONDRIAL ISSUES- are another issue with our kids
IRON should NEVER be given even if in multivitamin unless ferritin levels are being monitored - increases oxidative stress
some of the supplements you can try
Magnesium citrate - helps to calm also aids in numurous metabolic functions
Epsom salt bath - work up to 1 cup in a warm bath about three x per week
Curcumin - is an antiinflamitory , antioxidnt , helps protect against alzheimers disease that people who have Downs are prone to at young age
Vitamin B6 is a big one helps with stimming self injury and behavior
Vitamin C another big one to help fight oxidative stress
Cod Liver oil
DIGESTIVE ENZYMES AND PROBIOTICS are also huge if you look up the gut brain connection
Vitamin D3 also plays a large role in behavior and depression not sure where you live but most of us are deficiant Madi takes 2000 mg a day and that brought her blood serum to a normal level she is 7
I believe there is so much more like gluten free , dairy free , soy free diet will generally have positive outcome if followed at first you may see mor ebehavior due to his body detoxing but if he hasn't been checked for celiac don't start that yet and demand they test him people with Down Syndrome should be checkd once a year for celiac as well as thyroid function I hope some of this can help you guys another mom I know just started doing some of the supplements I mentioned to her she just started a week ago on the magnesium , l-taurine and epsom salt baths and she took all three meds away from her son which made me soooo happy I could help but she was just amazed at him sleeping through the night , he is calmer no anxiety, more complient for his daily routine so I hope my advice will help definately look stuff up and if you start anything always start one thing at a time and work up to the full dose I also always keep a log so I know if there is any change in behavior just good to keep as a referance any
where are you guys located maybe I can suggest or know someone who can a good dr for your son
Thanks so much and good luck - Jennwave:
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I know how you feel. My 18yr old Downs/Autism/Non-Verbal/BiPolar son has the same challenges. We've tried all meds and ended up with the rare but nasty side effects- the worst- swallowing disorder, for the past 6-7 years that comes and goes, even though he's been off all meds for a year. The Occular Crises no longer is an issue since we stopped all meds, thank god. But the swallowing issue still persists with all foods and liquids and some days are worse when he cannot correctly swallow anything at all and he chokes and coughs until whatever went down the wrong way comes back up.
Right now, he is going through another aggressive week and I am trying to stay cool as bathing, brushing teeth, shopping, any help with self care needs has again become dangerous- mainly towards me, mom, who has to take care of him. I noticed he picks up on emotions or pain that I am going through, or anyone else for that matter. When it's "my time of the month" he gets more difficult even when I try to hide anything I am feeling. Dad gets the same reactions too ( but not as aggressive toward dad) when he comes home from work after a difficult day at work, but is able to calm him down, if dad stays calm too. We may have to put my son back on meds before he has another extremely violent outburst and hurts someone outside the home. I hate to do it but I am at wits end as the "breaks" I would get when he goes to school are few, since I have to keep him home when he goes though these aggressive periods. He is my only child and I love him dearly. These aggressive periods usually last about a week, at least once a month which is consistent with his Bipolar mania disorder. When he is not in these aggressive moods he is so loving and cooperative.
We have gone through a year of in home behavior modification which has helped tremendously, but has not eliminated the occasional uncontrolable aggression. His bloodwork is good with no Celiac or thyroid disorders.
He has recently tested positive for the CMV virus in the past but from what I am learning, CMV lies dormant and can cause swallowing disorders, etc but so far our doctor does not think this could be the problem. Does anybody know a specialist in CMV that is covered by CalOptima? I am worried that this may be causing a lot of our problems as my son has a lot of the symptoms of CMV, even though his recent bloodwork does not show an active infection at this time. CMV seems to be a silent lifelong virus that can be passed through pregnacy, organ or blood transfusion (which my son had), saliva and urine and can affect people with immune deficiant disorders and can be reactivated when the body is weak from colds/viruses/stress.
If I find out more about this virus and it's possible reason for the outbusrts/swallowing problems/etc. I will post them here. If anyone has any info, please repond.
Hang in there, DanRocks- We're hanging on with you! Take care
Thank you so much for all of great info. I have not given him his meds for today, and have an emergency appt. with his psychiatrist this afternoon. I kept him home from school today to observe him.
He has tested negative for celiac, and I do have the thyroid tested religiously, as it runs in my family...100% of the women in my family have had Grave's or Hashimoto's.
I am also now making an appointment for an endoscopy, just got the call this morning that his modified barium swallow warrants further investigation. The doctor told me if GERD is noticed on a barium swallow, it indicates a serious problem.
I hate giving him all of these medications.
We live in the Atlanta area. Lots of good medical care here.
Again, your response was so generous...thank you so much.
My son has GERD and a small Hiatal Hernia. We did the barium swallow a few years ago and his GI doc put him on prevacid, but it did not seem to help with the vomiting. He recently had a swallowing test where they had him eat and drink different textures and we watched the sonigrams as he swallowed, but he did not choke! They could see that at that time, whatever he swallowed "almost" when down his breathing tube, but not quite. They followed they barium every 15 mins for a couple of hours with xrays to watch as it advance through his intestines. They could see the GERD but no other major problems. Then of course, the following day he was choking and vomiting, again. Arggg!
We've been waiting for a authorization from the insurance to see another GI doctor but here in California they've had so many budget cuts and also because of him turning 18 we are having problems with the process. I will call his doc today an insist on seeing a GI doc asap. I wish we could afford private insurance for my son so we wouldn't have to go through Medi-Cal. Please keep me posted on how your tests turn out. Our doctors are baffled and I'm tired of scrubbing the carpets and doing mass laundry. And I know he doesn't enjoy throwing up either. Poor guy.
I wish you and your family well,
Last edited by Administrator; 12-30-2012 at 11:47 PM.
Good luck with getting the GI appointment. Insurance battles....stink!
Armed with what I learned from you, with the psychiatrist this afternoon, lots of changes were made. You helped me tremendously by posting your experience.
First of all, this was acually the last thing we figured out...the over the counter med I had him on for the GERD may have caused the Ocular problem. That drug mixed with abilify can cause drug levels in the blood to increase, and induce side effects never before seen.
So, I am going to stick with Maalox tabs as needed for heartburn/nausea...also the drinking lots of water, cut down on carbonated drinks, spicy foods and raise the head of his bed.
He also cut down on his prozac by half, thinking it may be causing him to have an "edge". Well...more edge, actually.
He also said the eye problem is an extremely rare side effect. Yeah, I know rare side effects don't just happen to the other guy. My son is a twin...he has Down syndrome, his brother does not.
Dan also feels terrible after one of his episodes. Brushing teeth, showering, getting on the school bus....have always been so hard. His increasing physical size and strength...not so big, really...but when he is angry he is supercharged and it hurts when he strikes out. Sometimes I don't even want to try to "make him" practice hygeine. He comes around and apologizes for his behavior. Thanks, Trisha
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